what you can’t tell me

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Image is a photo of Brooke at age five. She is at the top of a climbing wall during a class for autistic kiddos that I helped to create at a local play gym. One of the first of so many CAN’Ts, WON’Ts and WILL NEVERs that became DIDs

 

You can tell me that this will be a long road.

You can tell me that it will be hard.

You can tell me that it will try my patience, test my resolve, make me question my faith, exhaust my spirit and, at times, break my heart.

You can tell me all of that.

 

I hope that you will also tell me that it will astound me.

That it will show me the depth and breadth and power of love, that it will steel my resolve, renew my faith, refill my spirit and expand my heart.

I hope you’ll tell me all of that too.

But no matter.

I’ll find those things out for myself.

 

Here’s what you can’t tell me.

You can’t tell me what my child will never do.

You can’t tell me that she won’t go to college, won’t live on her own, won’t love and be loved.

You can’t tell me that she won’t hold a job or write a book or change the world.

You can’t tell me because you can’t possibly know.

 

You may not believe that we can and are creating a world in which anything will be possible for her. I wish you would, but you don’t have to.

You might not believe in my kid. Smart money would never bet against her, but that’s your prerogative.

Stand in your own way if you must.

But please go doubt us somewhere else. We’ve got walls to climb.

18 thoughts on “what you can’t tell me

  1. Yes to it all.
    My son’s paediatric dr. told me ‘I never expected him to do so well….’
    Yes he still has some difficulties but we have come such along way. Thanks to lots of hard work but incredibly dedicated group of people who work with him and most of all CARE.
    He is thriving thanks to them.

  2. II beleive any child can do anything. They may do it differently but they can dream a dream and live it. They can reach for the stars and hold them in their hands.

  3. AMEN Jess! My daughter is a sophomore in HS, a cheerleader, has a 3.4 GPA, has empathy and loves boys. Yes, she enjoys her alone time. So do I! Don’t let anyone tell us what are kids are or are not capable of doing! Our kids will SHOW us and them! 🙂

  4. I’m sorry, but did you somehow go in my brain and write down all of the things that I think about and want to say to my son’s naysayers? I’m fairly certain that I’ll be saying some of this in an actual conversation with his SLP in a few weeks… thank you for being so articulate, and for BELIEVING!

  5. I needed this reminder today. Struggling to look at the positive after receiving yet another email from the director of the ASD school my 12 yr old daughter attends – how together to have a plan to work through the quirks and disruptive behaviors. Over coffee this morning and a few tears for me, my husband reminded me how far she’s come – how far we’ve come – and to not lose sight of the compassionate, intelligent, talented, funny, and loving child that she is – and he’s right, and I’m trying. BUT why does everything have to be so hard for her? Every freakin’ thing? Shouldn’t autism be enough? Getting clothes to fit, shoes that will go on her feet that are more like wedges due to a ridiculously high instep, a total lack of coordination, early puberty and her period at 10… plus the usual scripts, obsessions, and total lack of body awareness that comes with her PDD-NOS diagnosis. And she is an outsider with the kids in her own neighborhood because they think she’s too weird and I see the hurt in her eyes and it’s a kick in the gut. Yes, she has so many positives – but… but this morning I’m struggling. And I’m feeling bitter. And sad. And I love her so very much.

    • And it’s ok to have those moments. I don’t know how to not hurt for my baby when she hurts – and to not sometimes get angry that so many things are so damned hard. I get it. I really do. And it’s ok.

    • Jane, I’m right there with you. I’ve started to allow myself to model for my boys when I’m feeling sad & defeated, angry & deflated, so that they’ll know that these feelings happen and it okay to experience these moods and work with others to breathe, dump it out, and feel better – bit by bit.

      I don’t remember seeing my parents cry when I was young – ever. I don’t remember watching them resolve an argument – ever. By the time I did witness them managing their sadness/anger, they were preparing for divorce and ugliness abounded.

      I make a point to explain to the boys when I’m sad or disappointed that I need to breathe, work to release my frustration in a way that allows me to feel better without hurting someone next to me (this has come to involve popping sheets of bubble wrap, as my autistic 11 year old works to do when flustered), and I’ve learned (also from my amazing boy) that sometimes all I need is to have someone empathize with me. Not problem-solve. Not tell me what to do. Just hear me out.

      Modelling good use of sadness is important. Feeling what you feel and being true to it is, too.

      Take care, you!
      Stella

  6. Jess, I spent the night in bed worrying, crying, and got out of bed this morning pissed off at the world, and then I read this. Thank you for turning my day around. Once again, you are absolutely right! You are such a gift to the autistic community.

  7. This this a million times this. I try to help parents see (especially those with itty bitty little ones) that it is not necessarily the easiest path but by God there is a path and amazing things happen on it! I hope that by spreading this message and resources like your blog they start to see the possibilities.

  8. Reblogged this on shstngs and commented:
    This.
    How Jess knows that these are the words lingering in my thoughts, I’ll never know. But they are.
    “Stand in your own way if you must.”
    We’ve got places to go, walls to climb, oceans to cross, dreams to live, songs to sing, poems to carve.

  9. I watched a movie on Net flex or Amazon prime last week it was amazing. It showed how these parents had this autistic kid who could get know help from our world that was not kind so they developed their own. They decided to go into his place. The used a bathroom took everything he did they did. When he rocked they rocked after a while they started seeing little changes then they got better and better. Then one day all the work they did just stopped and he reverted back to the way he was before he started showing signs of progress. They started back from the beginning. and after a longer while he started to transform and he was learning so fast. It was based on a true story. these parents didn’t listen to the doctors the wanted the best for their son and made sure he got it.

  10. Jess, I remember all of these things so clearly. I was told she would never do so many things. Well, she is now a freshman in college, living on campus and LOVING it! She is studying special ed and elementary ed because, as she put it, “I want to teach kids like me that it is ok to be kids like me.” The fact that she will be one of the people who puts an end to the naysayers brings me great joy. (And to Jane S, don’t lose heart. She will get there, in spite of what everybody else thinks!)

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